Our son Kaleb Roman Palicki was born on August 15th, 2012. He was diagnosed with Lambdoid Craniosynostosis on October 23rd, 2012. Craniosynostosis is a rare birth defect that causes one or more sutures on a baby’s head to close earlier than normal.

The skull of an infant young child is made up of boney plates that allow for growth of the skull. The borders at which these plates intersect are called sutures. Therefore when a suture is closed, it causes problems with a normal brain and skull growth resulting in an abnormal head shape and asymmetrical facial features. The best and accurate way to diagnose Craniosynostosis is a CT scan (CAT SCAN) of the head. There are four main types of synostosis which are: Metopic, Coronal, Sagittal, and Lambdoid. In Kaleb’s case, he has the rarest of synostosis. Lambdoid occurs in 1 in every 300,000 live births and surgery is the only way to go.

Kaleb has a secondary condition called Chiari Malformation. It’s a malformation of the brain in which his cerebellar tonsils (bottom part of the brain) is herniated into his spinal column. There are many problems that his Chiari can cause a variety of symptoms ranging from: headache pain that can begin at the back of the head and radiate behind one or both eyes to the top of the head or temples. It is often described as a pressure sensation that can be heavy, sharp or stabbing. Coughing, sneezing, or even laughing can trigger some symptoms. There are also some visual symptoms: dizziness, difficulty swallowing, pain in neck or arms, and even worsening symptoms with problems walking, respiratory, heart and abdominal symptoms.

So far what we see in Kaleb which we don’t know if it’s from his Chiari or inter-cranial pressure. We saw changes in his bowel movements, he developed insomnia, and when he does fall asleep he will wake up screaming in pain, which will go on frequently. We also notice him pulling at his head a lot, and roll his neck back and forth. We have also seen Kaleb have difficulty swallowing or choking that comes and goes more often than normal. He doesn’t need to be eating or drinking anything for this to happen.

Kaleb also has a third diagnosis of torticollis which is a twisted neck in which the head is tipped to one side. Kaleb has been in physical therapy since he was diagnosed in October (2012). His torticollis has improved greatly with the help of his excellent physical therapist. We still have more to climb but what an improvement from birth.

Kaleb went under an invasive 6 hour long surgery on November 29th 2012 called a Cranial Vault Reconstructive surgery also known as CVR Surgery. It is a complex surgery that requires a pediatric cranial facial surgeon and a pediatric neurosurgeon. An incision is made from ear to ear and the skull is basically taken apart and rebuilt to provide room for normal brain growth to reduce inter-cranial pressure.

Before Kaleb could undergo his surgery he had to be seen and evaluated by a number of specialists. These specialists were a plastic and neurosurgeon, an ophthalmologist, neurodevelopmental psychologist and down the road he may have to see an otolaryngologists, speech and language pathologist, a dentist and orthodontist. The reasoning is because cranial facial deformities affect not only how the child looks but how the brain develops, how the child may see, hear, speak, eat, and breathe. In some cases some children have heart, lung, and kidney issues. It basically is take one day at a time and take all the good and positive you can. He will continue to see these rounds of specialists throughout his childhood as he matures into adulthood.

May 14, 2017
Prayers for Texas!! Hi everyone!! It's been awhile! People have been asking my husband and I.... How everything is going?? We haven't seen any updates!?! So here it goes.... Back in August, Kaleb's birthday was wonderful!! We took him to the zoo to celebrate and it was one to go down in the books! The holiday season was fantastic!! The best one yet! A lot of good times were had and a lot of memories were made. Kaleb was on a good streak and all his appointments were going well! So we were just living in the moment, day by day, enjoying EVERY SINGLE MINUTE OF IT:-) [More]

Aug 30, 2016
Hi all!!!! Sorry we haven't upated in awhile. We have been adjusting to our new routine of life and so far it's been pretty great! We are a little more tired then usual but life is good! Kaleb has been doing fantastic! We have had a total of nine doctor appointments since he had his surgery in Janurary and everything is checking out well! We are due to see most of his specialists this fall. We are also due back in Texas this March to see the rest of his specialists along with another MRI flow study. We will keep everyone updated about those appointments. Kaleb's treatment every evening is still working correctly. It still takes us about two hours every night but Kaleb is finally pain free when it comes to his tummy. His bloatness has also improved so much!! Our little man no longer has Santa's belly! [More]

Feb 12, 2016
A wise woman once told me that God provides our tiredness and helps our mind to not process too much at a time. She said it's our body trying to conserve energy for survival during the hard times. God lets you know when it's time to surrender and it always seems to hit just after the eye of the storm has passed. This wise woman told me that time will heal and to try and rest when we can. She told me to dream of what our family will do in better days to come....and I promise you, they will come. [Recommended Site]

Nov 30, 2015
Hi everyone!!!! We hope you all had a wonderful Thanksgiving!!! We just wanted to give a quick update about surgery... Surgery has been cancelled and pushed back... [celexa side effects in women]

Nov 9, 2015 We have a few medical updates for everyone but we wanted to first say a BIG THANK YOU for all the prayers, love and support that you all have given our family. First off....The results in regards to Kaleb's procedures back on October 19th and the 20th, have shown that a portion of his large intestin/colon does not work. What does that mean exactly... The muscles and the nerves are not working in the last part of his large intestine/colon. That is why the poor little guy is in pain from time to time and is also the reason why he can't get his poop out. For those of you that don't know, the large intestine/colon are the same thing. We didn't know that until now, so we are learning more as we embark on Kaleb's journey. The large intestine/colon is the big upside down U shaped intestine. After Dr. Sood (our motility GI specialist) looked inside Kaleb's intestines, he told us not only were they in bad shape but he feels Kaleb also has low muscle tone. What confirms his suspicions is that Kaleb was born with his stomach muscle lining open that never closed up. Dr. Sood said that makes it even harder for Kaleb to push. [More]

Oct 17, 2015
As Kaleb's procedures slowly approach upon us, we ask for prayers please. We leave this Sunday the 18th for Wiconsin and Kaleb's journey will begin on Monday and Tuesday at Children's Hospital of Wisconsin up in Milwaukee. Depending on how everything goes and what they find, we may have to stay longer. [More]

Oct 2, 2015
First of all..... we just wanted to say a BIG THANK YOU to everyone who rocked their purple in honor of our little man <3 You guys showed our family soooooo much LOVE and SUPPORT!!!! You guys are the BEST and we APPRECIATE each and everyone of you!!!! [More]

Aug 29, 2015
September is craniosynostosis and chiari malformation awareness month!!!! We challenge all friends and family to ROCK YOUR PURPLE!!! Help spread awareness and show our little Kaleb some LOVE!!! [More]

Aug 15, 2015
Happy birthday to our beautiful baby boy:) We are so blessed and very thankful that God gave you to us. Thank you for teaching us what's really important and for showing us the things that really matter in life <3 [More]

Kaleb has been at CDH since Sunday around 3:00am due to his gastrointestinal issues. The hospital has been trying different procedures to help him but are coming up with no results. They know there is a problem and are trying to find a solution, so we are being transferred over to Luries children's hospital this morning. Please pray for Kaleb for no surgery and for a solution.

Hi everyone :)we got some great news in regards to Kaleb's MRI flow study!!! Kaleb's brain looks good, brain stem looks great and it is not bent anymore :) spine looks good, CSF fluid is flowing just as it should and no tumor :))). So we got the best news ever and we don't have to go back and see Dr. Swift for two years!!! So as long as Kaleb is having no problems, two years is what we are shooting for in regards to his brain :). In regards to his bowels, we are still in communication with Kalebs gastro specialist and we are waiting to see how this month goes for Kaleb.

Mar 26, 2015
We are leaving for Texas on Saturday the 28th around 2am. Kaleb will be put under for his three hour MRI flow study scan. They are checking to see how his brain, brain stem and CSF fluid looks. In the mean time, with Kaleb's bowel issues he has going on, they are also checking for spinal nerve damage and a tumor. [More]

Feb 27, 2015
Sorry we haven't updated in awhile... It's been a little crazy around here, pretty much since we got home from brain surgery. It's been a lot of different doctor appointments! So from dealing with Kaleb's bowel issues and between the crazy sicknesses that were going around.... We have been to non-stop doctor appointments, blood work testing, x-Rays, and even more testing! [More]

Jan 12, 2015
Hi everyone! :) We hope you all had a wonderful Christmas and a safe, Happy New Year! Sorry you haven't heard from us but we were just enjoying every single second of this past holiday season. We were taking every single moment in :) Kaleb has been doing good, although he is still having problems with his bowels. Kaleb started having these issues the last week in October but we were trying not to panic and figure it out. During his recovery we had a couple of doctor appointments, along with an ER visit. We are just trying to get to the bottom of this. We are now at the point that we have no choice but to see a pediatric G I specialists. on another note, Kaleb's incision is completely healed and he has had no head pain or any symptoms regarding his chiari. The only problems Kaleb has been having, strictly has to do with his bowels only. We are now in the process of ruling different things out and and testing his poop as well. So far no infection in his intestines and everything is coming back negative. We are waiting on a couple more test, then it's off to see the gastrointestinal specialists. [More]

Nov 21, 2014
Kaleb is still doing good :) At first he wasn't eating and then he upgraded from nibbles, to small bites, to eating his first meal tonight.:) We talked with the nurse today and as long as Kaleb is drinking, he's doing good. They said he may not feel like eating and where they operated on the brain, it can cause nausea. So he's doing pretty good overall :) [More]

Nov 19, 2014
Kaleb's surgery was a success! It was about five hours long and our baby fought hard for us again. Thank you everyone for all your well wishes and prayers. We couldn't of done this alone.... We thank God, our Lord Jesus and all of you, for ALL YOUR PRAYERS!!!! [More]

We just wanted to say THANK YOU for all the LOVE and SUPPORT everyone has showed our family. Words cannot even express the emotions we were feeling when we saw so many people come to our son's fundraiser.

Seeing those two words, we still can't believe it ourselves. We feel like we are in a bad dream that we are about to wake up from. We keep asking God, is this for real??? Do we really have to do this??? Is this all a figment of our imagination??? Can this be????

Oct 3, 2014
We have gotten some news today that Kaleb will in fact need brain surgery. Please continue to pray for him, for us, our family as we work to process all this information. We will update later with the details. [More]

Sep 26, 2014
We are getting ready to leave for Texas!!!! We take off on the road at 2am on Tuesday and hopefully arrive there Tuesday evening. Kaleb is all set for his appointments starting Thursday at 7am. It will be a very long day for us. We check-in at 7am and register him, then they are putting Kaleb under for his MRI around 8am. [More]

Feb 13, 2014
Kaleb's surgery is scheduled for noon tomorrow and we have to have him there by 10:30 a.m.. Please keep Kaleb in your thoughts and prayers for tomorrow. We will keep everyone updated as to how everything goes. Thank you for thinking of him and for your prayers.

Feb 4, 2014
Hi everyone, sorry I haven't written in so long but things have been a little crazy. It is confirmed that Kaleb will be going in for surgery at Lurie Children's Hospital of Chicago for his 5th surgery. [More]

Sep 14, 2013
We had the most AMAZING day today!!! Good friends of ours with the help of their awesome family and friends, put on the most glorious yard sale we have ever seen. They made up these beautiful flyers and put Kaleb's story out there for people to see [More]

Aug 1, 2013
Kaleb's first surgery went well and he had no complications when he was under. When we saw him afterwards our hearts just broke as he laid there quietly with a whimper here and there. [More]

Proud Mommy of a Cranio, Chiari and VSD Baby!!!

"God only gave you this life because he knew you were strong enough to live it"

"People are like stained glass windows. They all sparkle and shine when the sun is out. It is when the darkness sets in that HEROES are revealed, as their mesmerizing courage shines through from the light within" - Elizabeth Kubler-Ross